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Polymyalgia Rheumatica and GCA

New discussion Join group Also known as GCA - Giant Cell Arteritis, Temporal Arteritis

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  • Emis Moderator M
    Pinned

    Reducing pred: dead slow and nearly stop method

    Copied from Eileen's post in another discussion. A group of us worked out reduction schemes individually that have allowed us to reduce far further than ever before but they are all basically the same - and they were based on a scheme a Swedish gentleman worked out when he simply couldn't get below 3mg...

    41 replies 13 votes Last reply
  • EmisModerator M
    Pinned

    PMR-GCA website addresses and resources

    If anyone has any further suggestions for inclusion do not reply to this but please contact me separately. PMR-GCA NE can be found at www.pmr-gca-northeast.org.uk The forums within the NE site are here - http://pmrandgca.myfunforum.org/index.php New Book on the Block – “Living with PMR&GCA”. ‘Living...

    7 replies 26 votes Last reply
  • Queenee 2

    Re Polymialgia Rheumatica

    I gave read several threads regarding PMR.  My husband woke up 1 day couldn't move we thought he had a stroke.  He has had it 5 yrs or mire & specialist says he now diesntbthink its that.  He has lost 60lbs in weight, had a heart attack last June, and husband muscles have wasted that his legs/arms have...

    16 replies 0 votes Last reply
  • artfingers 3

    Picked up my Rayos (slow release pred) cost $9,000 month!

    I am so happy to have insurance because today when I picked up my Rayos (Lodotra) a timed release form of prednisone available here in the US, my pharmacist said, do you know how much this costs? I was shocked to find out my cost is zero, but they are charging my insurance company $9,000 a month for...

    27 replies 0 votes Last reply
  • constance.de 6

    It's HOT, very hot, and I'm in pain.

    Decided I wiil do nothing all day. Got up at 7.30 and went straight to my recliner.  Husband made breakfast.😍Stayed on recliner for 3/4 hour.  What  now?  Oh, a little tiding up wont hurt!  Tidied up and dusted round (the sun, you know)!  Returned to recliner.  Now what?  It'll send me barmy if I sit...

    52 replies 0 votes Last reply
  • muddyooch 2

    Shoulder MRI or Ultrasound for PMR DX???

    So I'm the difficult one here...nobody wants to diagnose me but have every classic PMR symptom..but no blood markers....my Rheumy has again reluctantly given me another Medrol Dose Pack (I told her I felt like I was weeks away from a wheelchair!) AND she wants an MRI of my shoulders...if any signs of...

    6 replies 0 votes Last reply
  • rrobinson75 2

    Decreasing prednisone and now my buttocks and thighs ache

    I have had pmr for two years and have been doing well. I have had a few flairs during that time which have effected my shoulders only.  I am in the process (dead slow) of reducing from 6 mg to 5.5mg.  Out of the blue, my groin and buttock area are aching.  I have tried to ignore it but it is constant...

    4 replies 0 votes Last reply
  • sandy08116 2

    Coping with Giant Cell Arteritis

    I was diagnosed GCA in October last year. CRP level was 76. Immediately put on high dosage prednisone and within weeks, CRP down to 4, currently on 7. Every test possible was conducted, cardiac, vascular, optic. Biopsy of minor temporal artery confirmed diagnosis which was first mis-diagnosed as TIA...

    53 replies 0 votes Last reply
  • judy93591 3

    Dusting/Forum

    i absolutely LOVE and am so thankful for this forum and all the wonderful people in it. No matter our pain and miseries with this unwanted illness and pain, we must keep our sense of humour. I had washed and starched some  beautiful doilies my mother had crocheted many years prior to her death. Sooo,...

    56 replies 2 votes Last reply
  • Pepekeeper 1

    Polymyalgia - problems walking downhill

    I have had polymyalgia for 2 1/2 years now. I started on a 15 mg dose of Prednisolone In November 2009 and am now taking (June 2012) a dose of 4 mg Prednisolone daily. So I am making progress with reducing the steroid that I take. However, during the last 12 months I am finding it increasingly difficult...

    6 replies 0 votes Last reply
  • floramac 2

    Another flare up and cataract

    Hi, another flare up started 4 days ago. Current dose was 5mg. Tried 7 first day, 8 the second and then up to 10 yesterday and today. Feeling the relief, not completely but got rid of the worst. Last flare up, I did 5 days at the higher dose then back down to 5mg and all was ok. I have had a deteriorating...

    9 replies 0 votes Last reply
  • fiona25048 2

    new diagnosis PR

    I just got the diagnosis and 5mg Prednisone. Researching a little I see its also GCA. I am terrified. Will 5mgs do it? Need to see doc again. any personal experiences? Usually over reactive to meds.  

    46 replies 0 votes Last reply
  • Danrower 4

    PMR and life expectancy

    After months of diagnosis failure for my initial PMR experiences, I thought my time was coming. Like most here, Prednisone was a miracle, and the second miracle was remission, 18-20 months later.  I subscribe to several medical journal ticklers, and read occasional studies of the correlation of some...

    19 replies 0 votes Last reply
  • sheila105 2

    GCA

    I have just come out of hospital following loss of vison. Had a biopsy and found it to be Arteritis. I can see fairly well now although my left eye is blurred. This weekend I found I couldn't copLast Octobere with the headache, all I want to do is sleep, I have indigestion which doesn't leave me, the...

    32 replies 0 votes Last reply
  • Danrower 4

    Celebrity PMR

    Is anyone aware of any celebrity or well known person who has publicly admitted or "endorsed" PMR or GCA? Often times celebrity association is necessary to bring a little known disease to light!

    16 replies 0 votes Last reply
  • floramac 2

    Vitamin D

    Just had some blood tests done. All ok. Been on steroids for almosf two years. Currently on 5mg just starting the slow reduction. My vitamin d is 100, which is a good result. I took vitamin d during the winter and presuming I do not need to take any with that Result?

    21 replies 1 vote Last reply
  • scotth42 3

    Here we go again

    Long story short - had to up my dose to 20 mg for 2weeks from 15mg after being on 15 for several months. So, five days ago dropped to 18mg and was feeling good ( clearer head, more positive mood, more energy, etc ) until today. Today, six days out, starting to have minor aches but very lightheaded,...

    7 replies 0 votes Last reply
  • ling42044 2

    PMR Relapse

    Hi all I've been on the forum before.  Just briefly, i was diagnosed with PMR 4 years ago.  Started with 30 mgs and managed to come down 2 mgs.  Had a flare up this January after a bout of flu and went back up to 10mgs.  I've just returend from a long hol to Tibet /China (3 weeks, very tiring and taxing!)....

    24 replies 0 votes Last reply
  • kathy67492 5

    PMR, ACTEMRA, Pred Taper

    I have had PMR FOR 3-1/2 years...tapering from 15m as low as 7-1/2m. i had my second infusion of Actemra yesterday. Overall I would say things are better. Problem is, because I feel better, I have engaged in over-activity! I have had three flares in the past month, BUT, have recovered overnight! Normally...

    9 replies 1 vote Last reply
  • muddyooch 2

    Fibromyalgia PMR or both????

    Please please help!!!! I've been ill over the last year and a half....severe exhaustion widespread pain that rapidly morphed into bilateral joint pain....knees feet ankles hips wrists fingers shoulders and lower back...muscle pain bad in upper arms....climbing stairs and blow drying my hair are now tasks...

    18 replies 0 votes Last reply
  • celia14153 2

    Realistic Expectations from Pred

    My GP said symptoms would disappear and I would feel energised after 48 hours. This didn't happen. We've upped the dose to 20mg and the symptoms have much improved. However I am still slightly achy - and after lunch with a friend and a walk about town was flat out and had to rest. I'd love to know how...

    61 replies 0 votes Last reply
  • paula50188 2

    Polymyalgia

    Hi Iam new to the group. I have polymyalgia and cannot take any harsh meds. Ive been on steroids can't take them. Iam on natural supplements Turermic w/ curminin not sure how to spell it for inflammation does help but when wears off comes back. I have muscle pain tingling in the right hand mostly bottom...

    27 replies 0 votes Last reply
  • Elijo 4

    UTI's and PMR, I don't know what to do, please help!

    Since I've had PMR 1 /2 years ago I have have so many UTI's.  I'm down to 5 mg. and have not had an infection for almost 3 months (hurray), but it began again recently and I have all of the signs of which I'm very familiar with.  I had a UA, they prescribed microbid 100 mg. BID for 5 days without results,...

    13 replies 0 votes Last reply
  • linda17563 6

    Saw GP today, better than a visit to Rheumie!

    After seeing my useless rheumie in May, who wanted me to drop VERY quickly as usual. as is not evan sure if it`s PMR...I made an appointment with GP, and have just been....she said you drop as you want, as long as you want.....whatever works for you...yipee!......but then the bombshell, why have you...

    86 replies 0 votes Last reply
  • mary 49929 2

    Methatrexalate.....

    Has anyone had problems with this? Started it 17 weeks ago, now up to 7 two and a half mgs once a week.... nothing much happened, till a month ago, and boy has it kicked me for six!! Mouth ulsers continually feeling sick, and lost so much of my hair.. seeing my rheumi, finally, after weeks of waiting...

    5 replies 0 votes Last reply
  • alley2 3

    Head Pain GCA

    Hi all not been on for a while but been keeping up with the discussions. I've Had GCA for 12 months now & with the ups & downs that come with it but the latest one is head pain not had this one with the disease left side & it hurts  so lucky to strike the right doc sometimes gee this all helps as you...

    17 replies 0 votes Last reply
  • andrea93419 3

    Bloating

    Hi All! why is it that I'm only on 1.5mg of pred, but my stomach is still bloated and I'm still looking like a grape on legs!! 😡 I would have thought that on a low dose of steroid I'd start to look normal again??? Is anyone  else out there in my position too?? Feeling depressed that I'm still shapeless....

    3 replies 0 votes Last reply
  • jodiplage 2

    Pmr and rib pain

    Does anyone else have rib pain with PMR. Been on Pred for almost a year. Just started having pain in back ribs. Hurts when I take a deep breath. Had MRI- came back normal.

    9 replies 0 votes Last reply
  • andrea93419 3

    Bloating

    Hi All! why is it that I'm only on 1.5mg of pred, but my stomach is still bloated and I'm still looking like a grape on legs!! 😡 I would have thought that on a low dose of steroid I'd start to look normal again??? Is anyone  else out there in my position too?? Feeling depressed that I'm still shapeless....

    19 replies 0 votes Last reply
  • Guest M

    Prednisolone - side effects - bruising/thin skin

    Hello again - I have been treated for PMA and Temporal arteritis since last January and am currently on 7 mg/day of prednisolone with a view to trying to reduce 1mg every 4 weeks as suggested by the rheumatologist. I am 71. At present the worst side effect for me has been easy bruising and thinning...

    30 replies 2 votes Last reply
  • valerie81974 2
  • kerry62840 3

    GCA and tinnitus?

    I experienced a sudden hearing loss--actually everyone sounded like Donald Duck, and then I heard a pulsating sound, like a dishwasher rinsing for a long time.  It went away by the next day.   After posting my experience I  found that what I had was Pulsatile tinnitus.  It is far less common than regular...

    14 replies 0 votes Last reply
  • Gwamma 1

    Symptoms of PMR getting worse

    I am 50 and new to the group. I was diagnosed two months ago and have been on 20 mg of prednisone. The stiffness in the neck and shoulder are rearing the ugly head again. With the newest of pain recurring in the low back. All this just when my doctor told me to go to 15 mg today. So wondering if anyone...

    10 replies 1 vote Last reply
  • dea13 4

    DEA'S Update PMR and vack

    Hi everyone, My last update was 3 months ago, I have been busy since then. Last time I spoke I was taking blood thinners for a clot, well off them and all cleared. YAY! also I had a MRI scan done on my back and showed Spinal Facet Joint Arhritis > at that time I was asking for any information to help....

    14 replies 0 votes Last reply
  • SectionedThrice 1

    Medrol--small doses

    I was diagnosed with PMR in Sept, 2014.  Initially I was on Prednisone, 20 mg, then on Medrol, beginning in Feb 2015.  I have been using the wonderful "Dead Slow" reduction plan since October, 2016 beginning with 5 mg Medrol in the AM, and am now at the transition from 2.5 mg to 2 mg.  Having read here...

    3 replies 0 votes Last reply
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